Time heals

Raising a mentally ill or developmentally disabled child can take a tremendous physical and emotional toll. Parents find themselves thrice burdened: by therapy and medical bills that insurance won’t always pay; by the day-to-day effort to care for their children and control their behavior; and by the grief and stress of dealing with social stigma, knowing their children may not reach the usual adult milestones, and worrying about their future care after their parents’ deaths. But it does get easier, says Jung-Hwa Ha, an assistant professor in the School of Social Service Administration who coauthored a study this fall on well-being among disabled children’s parents. With age, she found, comes equanimity.

SSA researcher Jung-Hwa Ha

Published in the September Journal of Health and Social Behavior, Ha’s research analyzed data from the Study on Midlife in the United States (MIDUS). In 1994 and 1995 researchers sponsored by the MacArthur Foundation surveyed more than 7,000 Americans ages 25 to 74, looking at age-related differences in mental and physical health. A decade later, the National Institute on Aging funded MIDUS II, a follow-up survey using many of the same respondents. Among the screening questions it asked were some about rearing a child with problems such as cerebral palsy, Down syndrome, learning disabilities, attention deficit hyperactivity disorder, depression, schizophrenia, or bipolar disorder. Ha, who earned a sociology and social-work PhD from the University of Michigan studying late-life widowhood, examined the MIDUS II data to see how stress from the disorders manifested itself in parents’ lives. She compared 1,393 parents who did not have disabled children with 163 parents whose children had developmental disabilities and 133 parents whose children had mental-health problems.

What Ha and her team found was that among parents whose children had either category of disability, “negative affect” was higher than for the parents of normative children: they more often reported feeling nervous, restless, hopeless, worthless, or “so sad nothing could cheer you up.” They also registered more headaches, backaches, joint stiffness, and difficulty sleeping. The psychological well-being of parents with developmentally disabled children also suffered, but for parents of children with mental illness, Ha says, psychological health didn’t differ significantly from those who had normative children. Conversely, the parents of mentally ill children were less likely to be married, while marriage rates for developmentally disabled children’s parents weren’t much different than for normative children’s parents.

Most important, though, was Ha’s finding on “the moderating effects of age.” As MIDUS II respondents grew older, the well-being gap between normative children’s parents and disabled children’s parents narrowed. Among those in their late 60s, there was almost no difference at all. “Over time,” Ha says, “parents adjust to the stress of their child’s disability as they develop skills to better respond to their family circumstances.”

By coincidence, MIDUS II parents of developmentally disabled children tended to be several years younger than normative children’s parents, and they diverged more from the comparison group in negative affect and psychological well-being, a finding Ha calls consistent with the idea that advancing age improves well-being.

Ha’s study was the first to use a nationally representative sample and a comparison group to examine the effects on parental welfare of raising children with developmental or mental problems. The next step, she says, will be longitudinal studies to examine factors such as how “socioeconomic status, race, health characteristics, social support, and community resources influence the extent to which caring for disabled children affects parents’ physical and mental health.” The parents in Ha’s study did not differ by race, education, or socioeconomic status.

Ha also compared the relative well-being of disabled children’s mothers and fathers and found no significant difference. Although the responsibility of care falls mostly to mothers, they’re also more likely to have support networks and to find satisfaction and joy in their parenting role.